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Ohioans with developmental disabilities
soon will have a new option that allows them to be in charge of deciding what goods and services
they need to make life better.

Like other Medicaid waivers, the new, federally approved Self-Empowered Life Funding (SELF)
waiver pays for home- and community-based services so that people don’t have to live in
institutions.

But unlike current offerings, the SELF waiver gives consumers broad freedom and control over how
their waiver money is spent. That could allow for choices as varied as a new microwave oven to
prepare meals independently or a ride to a Kiwanis meeting so that they can participate in
volunteer activities.

Waiver recipients also can act as direct employers and, in many cases, negotiate provider
rates.

“You have the power to hire and to fire,” said Christine Brown, a local self-advocate who
teaches other developmentally disabled people how to represent themselves. “It’s more
self-directed. That’s a good thing.”

Existing waivers don’t recognize the consumers as employers, and they don’t leave it to them or
their representatives to find, hire and direct the people who help with such services as cleaning,
personal care, employment and transportation.

“The agency provider can send any individual they want,” said Patrick Stephan, a deputy director
at the Ohio Department of Developmental Disabilities. “It can be really impersonal.”

The waiver puts fresh emphasis on community inclusion and integrated employment so that
individuals choose the services that best help them to live as part of their communities.
Apprenticeships and internships, for example, could be covered.

“For a long time, there’s been this culture of suppression and segregation, all with the thought
that this is what’s best for people,” said Dana Charlton, executive director of the Ohio Self
Determination Association. “It’s just not true.”

Stephan said participant-directed waivers are a national trend. He estimated that more than half
the states have some version, “and Ohio is just now getting up to speed,” he said.

Enrollment is to begin in July. The state expects as many as 2,000 people during the first three
years, including slots for 100 children with intensive behavioral needs such as autism.

The SELF waiver has an annual cap of $25,000 for children and $40,000 for adults. Waivers are
paid with a combination of funds, generally about 60 percent federal money and about 40 percent
local.

Ohio Legal Rights Service, an independent state agency that advocates for people with
disabilities, said it supports the self-directed concept but not the caps.

The agency also said the state should make sure the new waiver isn’t used as a means to limit
the expenses of those who already have a different waiver — the Individual Options waiver — that
has no cap.

Stephan said the new waiver comes with safeguards. Providers hired for personal care must be
certified, and expenses are to be paid through a state vendor. Individuals also can choose to hire
a “support broker” — a person to help them manage goods and services.

Charlton said she expects the waiver to make allowable expenses less rigid and more tailored to
individual needs.

“They won’t have to fight the system to get it to pay for something that could make their lives
better,” she said. “It’s very exciting — especially for people who have pretty strong feelings
about their lives.”